[finnParticipant]

Hi

Sorry to hear about your troubles. PP level 6 is quite low and it could be just MGUS, a precursor of myeloma which does not require treatment and may not even lead to a full blown disease. However, anemia is a common problem in myeloma. Do you know your hemoglobin level? Anemia could explain lots of your symptoms, such as getting tired when walking up the hills, being tired generally, and feeling dizzy. Good that they are doing a bone marrow biopsy, then you will know for sure how things are. Hopefully it is just MGUS and nothing more serious.

[finnParticipant]

Hi sabs

I am on Carfilzomib too. I had it twice a week for the first cycle but this was so toxic that it caused liver damage and we had to reduce the dosing to once a week only. This has been as effective as having it twice a week, and I do not have problems with liver enzymes anymore. I don’t get nausea from it or steroids but I do get lots of stomach issues (which I didn’t get with previous different drug combinations containing steroids). So it is possible that the side effects your husband is having are from the combination of Carfilzomib and steroids.  Would it be possible to reduce the Carfilzomib dose, or have it once a week only?

[finnParticipant]

Hi Sabs

Which drugs does he take for nausea and stomach issues? I tried quite a few different drugs for nausea and (finally) I was given Ondansetron, which worked really well. For stomach issues I have always been prescribed Omeprazole, which works most of the time but not always. Susie’s advice about taking steroids with food and drinking milk/eating dairy is a very good one. Hope it all goes well this cycle

[finnParticipant]

Hi Susie

105 mg of prednisolone is equivalent to 17 mg of dexamethasone, so hopefully you will not get more side effects from it. Melphalan on the other hand is a classic chemotherapy drug and I would be surprised if you do not get some side effects from it, even if having only a low dose. Hoping it gets easier for you and best of luck with the treatment

[finnParticipant]

Hi Susie

My PPs were slowly climbing up and I got to 18 before the treatment was restarted. At that stage I had no symptoms at all.

[finnParticipant]

Hi Millie

Your sickness sounds awful. I had similar symptoms after SCT. Maybe cyclophosphamide caused damage to your guts like mephalan did to my stomach? I felt sick all the time, day and night, and no anti-nausea pill helped (although domperidone might have helped a bit, you could also try dexamethasone). To be able to sleep I had a sleeping pill every night. Days I had to struggle through. It lasted about 6 weeks and after that it slowly got better. Really hoping yours will get better soon. Best of luck

[finnParticipant]

Hi Andy

Good to hear that you are doing well. Just out of curiosity, are they offering you a possibility to go on daratumumab? I would like to try that drug next but I don’t know if it is available for us here in UK yet. Are they offering you MUK8 trial because you previously responded well to proteosome inhibitors such as bortezomib?

[finnParticipant]

Hi Jan

My consultant thinks we should try to get the light chains as low as possible, however long it takes. It is difficult to understand why yours thinks that a bed in a hospital is good enough reason to do SCT even if your light chains are still dropping. I was on Lenalidomide and Dex for 8 cycles, and looking back could have been even longer just to make sure that I have plateaued. Anyway, most likely SCT and consolidation gives the same result as longer treatment and SCT. Good luck

[finnParticipant]

Hi there

In most cases it is very easy to diagnose myeloma by a simple blood test that measures paraproteins. To do that, you have to ask your GP for this test though, as it is not routinely determined from other blood tests. And yes, I would want to check it to find out if you have myeloma. I had the same symptoms as you. It would be good to do the test just to rule it out for some peace of mind. All the best

[finnParticipant]

Hi, I had real problems of sleeping on dex nights, and even the next night after that. Eventually I got so tired that I asked my doctor to prescribe some sleeping pills for the worst nights. They really helped me to get a good sleep. It was important for me as I was working throughout the treatment and I could not do my job being tired. During the down days I was not too tired but very irritable. That was very difficult to suppress. As Rebecca said, the first cycle is the worst, it will get easier when you know what to expect. Best of luck

[finnParticipant]

Hi Bob

Interesting article about gene therapy in multiple myeloma. It looks like it has not been very effective treating myeloma so far, as in the American study published in Nature Medicine the progression free survival, PFS, was only 19 months, and it was estimated that all patients in the study would relapse in about 30 months (graph shown in supplementary figure in the paper). So definitely not a cure yet. However, I am sure they will develop better markers/cells for this therapy and we will see these being tried soon. Best

 

 

[finnParticipant]

Hi Bob

Your myeloma journey sounds very encouraging, only second course of chemo in 9 years, well done. About the novel genetically engineered immune cell treatment, it is not available for general public yet. It has been used in few cases whrere there are no alternative treatments available. However, this novel thereapy, which sounds perfect, is not without its risks. Although they are using the patiens own cells, the cells still need to be genetically altered and this is not a foolproof process. When genetic material in cells is changed/added, there are no guarantees that only the correct modifications will happen. We will see in the future if in each individual case the genetic manipulation has been faultless and will cause no harm to the patient. Of course when there is no hope for any other cure, this method can be at least tried, as it has been done with these few young patiens. I am sure your doctors will find something less risky treatment options suitable for you. Best wishes

[finnParticipant]

Hi Karen

Great to hear that your SCT was so successful. I had mine two years ago and I can remember how I also realised some months after it how poorly I must have been as I suddenly felt so much better. It keeps getting better and better and about a year after SCT I felt completely normal, if possible even better than I had felt for a number of years. Then again, I had had back and rib pain for nearly 10 years. I am still in partial remission and it feels great. Hope you will have a very long remission. Best wishes

[finnParticipant]

Hi Andy

Great to hear that you are on the mend. We were very worried, and I kept on checking this discussion forum several times a day to see if you had written anything! If you still feel weak and the drugs are too much, please ask them to give you a break from any treatment. You can always go back on Pomalidomide and Dex when/if you paraprotein levels start to go up. Wishing you a speedy recovery!

[finnParticipant]

Hi

Sorry you have had so many problems with the diagnosis. Sometimes myeloma is so different from others and shows no other symptoms than bone lesions.  I have read about cases like your husband’s: non-secretary (no M-spike) and clear bone marrow biopsy, and the progression of the disease has to be followed by imaging only. Hope your consultant explains more about it on your next visit. If not, how about changing the consultant? Best of luck

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